2013 Consolidated
The following updates, originally sent in email, are shown below in chronological order.
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Note: It is my hope that this detailed chronicle can help others dealing with Myeloma or undergoing stem cell transplant. Please share with anyone who might benefit.
Date: Fri, Mar 15, 2013 at 5:36 PM
Dear Family,
Here is my update after our meeting today with the doctors:
Today we went for the "chemo teach". We spent about 90 minutes with the "team" who had a huge binder full of tabbed info and a multi-month calendar of treatment dates. We went over the drugs he'll be given, dosages, side effects and protocols for adverse reactions.
He'll be on a 21-day cycle of Velcade (bortemozib), which is a proteasome inhibitor chemotherapy, which will be given as a sub-cutaneous shot for 2 -3 cycles (but possibly more). Each cycle is two weeks on, one week off. During the "on" weeks, he will get the chemo on Mondays and Fridays. The worst side effects are typically mild-to-severe neuropathy, mild-to-moderate nausea, acid reflux, and possibly shingles. He won't lose his hair from this chemo. Overall, this is a well-tolerated chemo treatment.
In parallel, but on a different schedule, he'll be taking high "pulse" doses of the steroid dexamethasone (Decadron),40 mg / day, four days on, five days off during the chemo treatment. The Decadron has more immediate side effects, including irritability, insomnia, huge appetite and high energy levels during "on" days, and fatigue during "off" days.
He will also get a monthly bone treatment called Zometa, used to reduce and delay bone complications due to multiple myeloma, which does not seem to be a risk for him in terms of side effects, since he does not already have bone lesions.
The goal of the chemo is to reduce the number of plasma cells in his bone marrow as much as possible, to be followed by an autologous stem cell transplant (his own stem cells, not a donor's.) The transplant will hopefully be at Baylor Hospital in Dallas (although this is not yet certain); my parents have a condo there, near Baylor, and we have close family friends in leadership in the Baylor oncology departments. The process is about 30 days, and will not necessarily require hospitalization.
The head of the Baylor transplant center called Joe today and spent about 45 minutes on the phone with him explaining the process in detail: first, they hook you up to a machine that circulates your blood (kind of like dialysis) through a filter that captures the stem cells. It can take a few hours in one day, or over a few days, to collect enough stem cells. They then "process" those stem cells to make them pristine. Then they give you heavy-duty, short-term chemotherapy. That will make his hair fall out. they will basically kill off most of his own bone marrow, then give him back his own stem cells via IV infusion. The whole process can be done outpatient over a series of weeks, and does not require hospitalization or seclusion unless you become very sick. They don't actually go into the bones at all. They said he'll be tired for the month following the transplant, then start to really feel alot better by month #2.
If the chemo goes as imagined, he'll have the transplant in June/July we think, but we will know more in the next 8 weeks.
We go in Monday morning at 9 am for the first treatment (chemo, decadron and zometa). The whole thing shouldn't take much more than an hour. That's the story. We got the news last week that he has had zero bone degradation, which is very good news. We are taking that as a great sign!
Joe is still not ready to tell the world, so please make sure that any family who are updated know not to post anything on FB, and please not to talk about it outside of the family.
xoxo
Barbara
Date: Fri, Mar 29, 2013 at 11:28 AM
Hi friends,
I am so sorry to be delivering bad news via email, but we are just not up to so many phone calls yet.
Joe is finishing his second week of chemo for Multiple Myeloma. We've only known for a month and it's a huge shock, and Joe hasn't felt like talking about it (and still isn't ready for the news to be public, so please be discrete.) We have only told our siblings and the kids, of course, and we are starting to reach out to our close friends. The kids are doing well, and taking the news pretty well. We are playing down the details with them, focusing on business as usual.
Multiple Myeloma, which is a cancer of the bone marrow, is not considered curable, but it is not the death sentence it once was. New drugs and new combinations of drugs are headed toward a chronic-disease model (think long-term HIV maintenance). Joe is taking a chemo drug called Velcade and a high-does steroid called Decadron, as well as monthly I.V. bone treatments.
The bad news is that Joe has a somewhat progressed case, meaning that he has a high "burden" of malignant plasma cells in his bone marrow. The good news is that he has had no bone degradation or kidney damage. This lack of symptomatic involvement is a great indicator for a successful outcome, which would be long / indefinite periods of remission.
He does have anemia and neutropenia, (low red and white blood cell counts) and low platelets, and he is quite fatigued. The low blood counts were discovered as a result of a regular health check, leading to more blood tests, and a bone marrow biopsy and diagnosis. The doctors estimate that in order to achieve remission, he will need 2-3 rounds of chemo (roughly 3 months), followed by a stem cell transplant, probably in the June time frame. We will know more next month. The stem cell transplant uses his own stem cells (autologous) rather than a donor.
Joe is a rock, of course, and is going in to work every day. EJ leaves for a European tour on Monday, so that has been keeping him busy. The days when he takes the steroids are good and high-energy; the days without are pretty dragging energy-wise, but really aside from some minor neuropathy he hasn't had any bad side effects. The chemo he is on now doesn't make his hair fall out or make him very nauseated. But during the transplant they will give him that bad chemo. Then by the end of the summer he'll be in remission (they can get most everyone in remission with the frontline treatment). The trick will be to keep him in remission! Either way, this current period will be behind us in 90 days or so.
I am still working, albeit a reduced schedule, but I have withdrawn from the doctoral program for the foreseeable future. There is nothing that we need except prayers and good company (I'm still cooking every night and Joe and I love to get together with our friends!) We promise to ask for help if we ever need it! There are no major disruptions at this time.
Love,
Barbara (and Joe!)
Date: Sun, May 5, 2013 at 3:45 PM
Hi Everyone -
Joe is doing very well! He is in his third round of chemo, and his blood tests show an amazing response - his numbers are almost all normal! As a result, the doctors have actually reduced his chemo, hoping to avoid worsening his neuropathy side effects. His fingers and feet are numb, which is bad enough, but the worst is a loss of taste! Hopefully he will regain most, if not all, of his sensation and taste in time for Thanksgiving.
He developed shingles last week, and is taking anti-viral and pain medicine for the related (severe) nerve pain, which is now under control. He doesn't like taking pain meds and Ambien at night, which are a heavy combination of drugs...BUT they are working. He's sleeping well at night, pain free (which means I am sleeping at night, too). By the time he has showered and had his coffee and breakfast, he's pretty much good as new, working every day, just like always.
We went to Dallas last week to meet with the stem cell transplant (SCT) team at Baylor, and we feel confident about our decision to have the transplant at Baylor in Dallas. Many friends have recommended MD Anderson, Univ. of Arkansas, Mayo and Cleveland Clinics, and Joe has talked to doctors and patients about their experiences at other facilities, but the Baylor Stem Cell Transplant Center in Dallas is a state-of-the-art facility that performs about 300 SCT's per year, compared with 1000, 1500 or more at some larger SCT centers. That means that while the procedure, technology and medicine are very standardized, and thus almost identical at every facility, we believe that we will have the most personal attention and face-to-face time with the Doctor at Baylor. Also, Joe and I both have quite a lot of family in the Dallas area, and my parents have a condo in central Dallas very close to the Hospital where we can stay. They are generously rearranging their summer to stay in Dallas "keeping us company and cooking for us." Who could turn that down?
The pre-transplant testing has been scheduled for Tuesday, May 14. We will be in Dallas for the full day of testing (including another bone marrow biopsy); the results will take about a week to come back, and then assuming the results are as expected (he must have no more than 5% malignant plasma cells remaining in his marrow), another couple of weeks to get approval from our insurance company for the transplant (they have to certify that he is "ready" for transplant). That will put us in early June, hopefully right after Francesca graduates on June 5. If we can start around June 12th that will be ideal, given the information we have today.
The entire stem cell transplant process will take about 30 days. Week One is stem cell collection, Week Two is chemotherapy and stem cell reintroduction, Weeks Three and Four are monitoring while waiting for the stem cells to reestablish. The entire process is outpatient, 7 days per week, minimum 9 am - noon. The chemo they will give him in Week Two (just a single dose) will make him feel very sick for 5-10 days, and then make his hair fall out, but by the time we head home he should be feeling much better. His recuperation at home will be at least another month.
All in all, we feel fortunate that this part of his treatment has been fairly easy to tolerate, and of course grateful for his excellent response. Thank you all for your prayers, really...thank you.
Copeland will be home from college this week, and will live at home and work this summer. She has done very well in her first year of the Hotel and Restaurant Management (HRM) Program at Univ. of Houston! Francesca graduates soon and will also work this summer, living at home, before heading to college in Durango, CO this Fall. While we are in Dallas for the transplant they will stay here, under general watch of our many friends and neighbors. Carter is working full-time as an art director for a local magazine, and Enzo is still attending ACC and working part time for my brother Bill. Everyone is doing well - which helps!
I'll send another update when we know the specifics for the transplant. A few people have asked, so I want to clarify, about whether Joe needs a donor. He does not - the stem cell transplant is "autologous" meaning they will use his own stem cells. It's amazing how far the technology has advanced; they do not drill into your bones, so there is no isolation and no hospitalization as long as you don't get too sick. Because the immune system is being wiped out (and essentially re-seeded), he will not be socializing much, but at least we don't have to stay in a hospital for a month!
Let me know if you have any questions, and I hope you are all doing well - enjoy this great weather we are having!
Love,
Barbara (and Joe)
May 20, 2013, at 8:46 AM
Hi Friends -
Just a quick note today. We went to Dallas last week (Friday instead of Tuesday) for the long day of pre-staging tests. These tests were required to ensure that Joe is both *ready* for the stem cell transplant and that he is *eligible* for the stem cell transplant.
The tests performed last Friday included:
Echo-cardiogram
Pulmonary Function Test
PET Scan (full body - had to run him twice to get his feet since he was too long for the machine!)
24 urine
Blood Tests (organ function, etc.)
Bone Marrow biopsy
*Readiness* means that his marrow must contain no more than 5% malignant plasma cells. The original measurement of malignant plasma invasion in Joe's marrow was 90% in February, but preliminary blood tests suggest that he is at or below 5% now - an awesome response to the chemo. We will continue the chemo/steriod treatment until the transplant. Today is the first day of Round 4.
*Eligibility* refers to the insurance company's assessment of Joe's overall health and progress; they will not approve the transplant if there are other major health issues. We do not expect any setbacks or surprises in this category.
We hope we'll have the results by this Friday, but we won't know until we know. If the tests are as expected, we are penciled in to begin the transplant on Thursday, June 13th.
The Charles Sammons Cancer Center at Baylor Hospital in Dallas was great, by the way. Joe's appointments ran from 7:30 am to 4:00 pm, in three different buildings on the Baylor campus, and EVERY single appointment was on-time. It was amazing. The staff were competent and friendly, and the facility was excellent. We feel great about the hospital choice.
We will write back next week when we have the results. In the meantime, Joe's feeling pretty well and life rolls along, with work and kids and loving friends and family. We are lucky people, and so are you.
xoxo
Barbara
Date: Thu, May 23, 2013 at 10:52 AM
Subject: The Power of Prayer and Positive Thoughts....Works!
The biopsy results are in! Joe's bone marrow contains less than 1% malignant plasma cells, which is pretty close to ZERO.
That is down from 90% in February, friends.
The doctor said it's nothing short of amazing; even in the very best cases, the "invasive plasma" rarely falls to near zero. The nurse oncologist who manages us week-to-week said she has never seen anyone respond this quickly.
Joe has reached total remission, which is also corroborated by now-normal Beta-2 microglobulin and light-chain tests, for those of you who are in-the-know of such things. Each of the three separate indicators (marrow, Beta-2 and light-chains) measured Joe's case as advanced (stage 3 of 3) when he was diagnosed three months ago. So this news is just shockingly cool.
He has been approved for stem cell transplant, which will lock-in his remission for what we pray will be a very long time. The transplant process will start on Thursday June 13, and we should be home around July 8 or 9. We will be staying with my parents in Dallas. (3641 Turtle Creek Blvd., #4A, Dallas 75219)
We know that so many people have been praying for Joe, and we thank you from the bottom of our grateful hearts. Modern medicine, prayers, good food, good friends, and a GREAT attitude are all assets for our Joe!
With great love,
Barbara
Date: Mon, Jun 17, 2013 at 10:38 AM
Subject: Update on Joe - Stem Cell Collection
Hi Friends -
Joe is doing well and we are moving forward through the process. Since last week, Joe has had daily shots to stimulate stem-cell growth and circulation, and a blood catheter was implanted on Friday (see below). A tube has been inserted into his jugular vein all the way down close to his heart. The other end sticks out of his chest with three extensions.
This morning, we showed up at 6:30 am to start stem cell collection. They connected his blood catheter to a big machine that pulls blood out of one extension, sends it through a large set of contraptions that separate the stem cells, then cycles the blood back into Joe through another extension on the catheter. Joe says the catheter itself doesn't hurt, and there is no sensation at all to the cycling of the blood through this machine. Amazing.
Yesterday we had Father's Day with my Father, and Joe heard from Carter by phone, and these kids by text-picture:
All is well. We will continue with Stem Cell collection until they have collected 5M. Then he will be "off" until Saturday, when he receives the chemo. A week from today, next Monday, he will receive the stem cells back, which is the transplant. I'll send another update then.
Thank you for your love, friendship and prayers!
xoxo
Barbara and Joe
Fri, Jun 21, 2013 at 3:01 PM
Subject: Update on Joe - Stem Cells Are Transplanted!
Hi Friends -
I am writing you from Joe's room in the Blood and Marrow Transplant Center at Baylor, where he is sleeping soundly after the transplant around noon today. We are three days ahead of schedule, due to Joe's high production of stem cells on Monday and Tuesday. He had chemo on Wednesday (instead of Saturday), and the transplant was today (instead of next Monday). This is all good news, though I will say that Joe is not feeling well... At least he is sleeping a lot and getting excellent medical care.
The transplant involved having four frozen bags of stem cells thawed, one at a time, and pushed into Joe's bloodstream (see pic). They gave him benadryl ahead of time to forestall any allergic reactions to the preservatives used with the stem cells, and the benadryl knocked him out right away. He slept through the whole process, in which he received 3.8 million blood stem cells, almost twice as many as his doctor was aiming for. The more cells he gets, the faster / better the new cells will settle in and start producing new blood for Joe.
Yesterday, the day after chemo and the day before the transplant, we went to my Dad's barber shop and Joe had his hair buzzed, in anticipation of it all falling out in the next 10 days or so. Here are the before and after shots:
Now, we head home for the day, and start the monitoring process. We have to come to the tranplant center every morning at 9 am (even weekends); they will check his blood and give him anything he needs (blood, platelets, potassium, magnesium, antibiotics, etc.). Around Sunday or Monday his white blood cell count will bottom out at zero, so that's when he'll be most isolated in terms of wearing a mask outside of my parents' place,and avoiding people, pets and germs. By the 1st of July he'll be improving and should be discharged around July 5 if all goes as planned.
Thanks for all the prayers, vibes and good energy!
Barbara and Joe
Date: Fri, Jun 28, 2013 at 12:16 PM
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Hello Friends,
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Today is the 7th day post-transplant, and 9th day post-chemo. Joe is at the low point of this process, but everything is going according to plan.
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His white blood cell count is zero, and his platelets and red blood cells are both critically low. Today he is getting a platelet transfusion, and tomorrow or the next day he will get the first blood transfusion. Neupogen shots will also resume tomorrow, to stimulate white blood cell growth, and to encourage his transplanted blood stem cells to finish settling into his bones.
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Joe's worst side effect has been severe fatigue, and there is a certain amount of mental fog associated with this treatment too (which of course will improve as he improves overall). Thankfully, nausea and related problems have been minimal. His has not lost any hair yet.
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Yesterday, we employed the "laughter cure" thanks to Enzo, who gifted Joe with a comedy special from Jim Gaffigan. We laughed out loud and it was a great tactic - thanks Enzo!
That's about all the news I have. He's not eating much, he's sleeping a lot, and he manages to keep up with our forwarded mail just about every day. He is not much for talking on the phone yet, just FYI.
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He will start feeling better sometime next week, and I'll write again when he turns the corner. Until then, thank you for the prayers, vibes, love and friendship.
Love, Barbara and Joe
Date: Sun, Jun 30, 2013 at 11:27 AM
Subject: Joe admitted to hospital
Hi Family -
A quick note to tell you that Joe was hospitalized last night after a low grade fever (which began Friday night) spiked to almost 102 yesterday afternoon. For anyone without a functioning immune system, that's a problem. They tested him for everything possible, and the preliminary blood cultures showed that he has a gram-negative infection, which requires a combination of IV antibiotics pretty much around the clock. He is already responding, and even ate a big breakfast this morning.
The final results of the blood cultures will come in tomorrow, which will allow the Doctors to further target the specific problem bacteria. They told us the infection is likely from bacteria in his own gut, which can get out of control when the immune system is off-line. They will hopefully release him Tuesday. By Tuesday or Wednesday his white blood cell count should start increasing and he should start feeling better anyway.
This was one of the known risks, and the team here is really on top of it. My parents have been a huge help and spent hours with us yesterday in the special ER for cancer patients (we were the only ones there on Saturday night, so of course we got a lot of attention!)
I'll keep you posted, but maybe send Joe some special prayers and good energy today!
xoxo
Barbara
Date: Tue, Jul 2, 2013 at 10:23 AM
Subject: Joe has turned the corner....
Hi Family and Friends -
Joe's blood counts are all on the rise and he is feeling better! Yesterday he even got on the phone to do a little business and it was so good to hear him sound...like himself.
Unfortunately, he did get an infection and high fever over the weekend, and was hospitalized on Saturday. They treated him with targeted antibiotics and by Monday he was feeling 150% better.
He is being released today, as the infection has been wiped out and his immune system is coming back on-line, right on time.
We are looking forward to being HOME in Austin sometime next week. He has truly turned the corner in this long, successful process.
Thank you everyone for the love and prayers -
Barbara
Jul 4, 2013, at 4:14 PM
Subject: Final Update - Joe's Going Home!!!
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Hi Friends and Family -
It has been an eventful few days, with a surprising turn of events.
Joe was released from the hospital on Tuesday, where he was receiving inpatient treatment for a blood infection since Saturday. We had to negotiate pretty hard with the doc to get out on Tuesday, but after doing three weeks of outpatient treatment, those three nights of inpatient felt like a prison sentence! Of course, the infection had cleared up or we wouldn't have had any room to push.
So on Wednesday (yesterday), we reported again to the outpatient clinic for our daily routine of blood tests, IV anti-biotics, potassium, etc. By 2 pm, we were packing up to head home for the day, when our primary doctor walked in. He told us that Joe's latest blood work looked so good, he would release him to the care of our doctor in Austin. He said the vascular surgeon was coming at 4 pm to remove the neostar blood catheter, and we would be .....DONE. We were shocked and thrilled, needless to say. Francesca was with us, having flown up for a quick visit, and was apparently our good luck charm!
We will have to see the doctor in Austin once a week for three weeks, then monthly for blood work. At the three-month point (early October) Joe will begin taking maintenance chemo in a pill form, which may continue indefinitely.
That's it folks! His hair did start coming out in clumps, so we buzzed it off, and have our fingers crossed that he'll keep his eyebrows!! Thank you for all the love, prayers and support. Joe is still very fatigued, and still has to be careful in close proximity to sick people, but otherwise is good to go! We are driving home to Austin tomorrow (Friday). I want to thank my parents, especially, for their daily, generous help and support over the last few weeks.
MUCH LOVE,
Barbara and Joe.